Our precious little boy, Oscar, was diagnosed with high risk neuroblastoma (an extremely rare and aggressive childhood cancer) on 30th November 2011. After a long and tough battle he was finally given the all clear in April 2013 but sadly it returned in August 2013. This blog is to update our many friends and family members who are supporting us and Oscar in this battle.

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Saturday, 17 August 2013

Fundraising

We have been absolutely inundated with messages of support for Oscar and our whole family in this past few days, which has helped us to get through the emotional hurdle of beginning treatment once more. It's important for us to draw strength from somewhere, so we can be the strong parents Oscar needs us to be and will him to fight to get better. I was (briefly) sad while Stephen was (briefly) angry, as we learned of negative comments being posted online about how we don't spend enough time focusing on Oscar, use our son's illness to seek attention, and take advantage of people's good nature... However we quickly realised that nothing can hurt us more than the words "new disease" we heard, despite how much love they were delivered to us with last week.

We don't feel the need to justify ourselves or our actions, but I do want to get this off my chest. We started this blog, and our Twitter page, initially to update family and friends about Oscar's progress. It must have been a fascinating insight into what incredible children like Oscar, dozens and dozens of them here in NI just like him, face as they battle cancer. Hundreds, then thousands, of people began to follow. We shared the highs and lows, and lots of powerful pictures, to tell his story. We are well aware than he is "not the only child in NI with cancer", we have become close friends with many of those other families who quietly deal with this heartache every minute of every day. It is not our place to tell their stories, we tell Oscar's story, and are as proud of him and everything he has achieved as any parent could be.

The desperate need to fundraise, which we have explained in minute detail throughout our campaign, forced us to use every avenue we could to raise £250,000. Of course we sought media attention and absolutely worked ourselves to the bone to make it all possible, how could we have done it any other way? If we could go back to those days when no one knew anything about us, or had never heard of "Wee Oscar", we'd do it in a heartbeat. "Normality" is all we've been seeking to achieve since day 1.

Thanks to the incredible and unimaginable love shown to us and Oscar in our hour of need, we now have a lump sum held in his name with the registered charity Neuroblastoma Children's Cancer Alliance. This will open doors to us in treatment centres around the world IF we can identify a suitable treatment (together with his medical team) for him. At this moment in time, Oscar will receive treatment at hospital in Belfast, and so we have no intentions of/need to fundraise for him. We are extremely grateful to every kind-hearted person who has stated their willingness to do this, it often brings tears to feel such generosity. NCCA are always fundraising for many families in despair like we were last summer, donations are always welcome and will help some poor child with neuroblastoma. Several families here are fundraising to help them with the financial stress a childhood cancer diagnosis places on a family, and the potential need for treatment abroad. The childrens haematology ward in Belfast (which provides Oscar's care) is always in need of some piece of equipment or extra help. NICFC and CLIC Sargent are another 2 local charities depending on donations to help many families like ours. There are ALWAYS children's cancer groups needing financial assistance, but right now we are not asking anyone for that for Oscar. Thank you - you have bought us the luxury of focusing on his care at this time by showing such incredible generosity last year.

Once again I have waffled on, trying to make sure I've made everything clear. The most important news of today is that Oscar was in slightly less pain, had his first dose of chemotherapy, and is fast asleep (and snoring!) beside me right now. We will keep you posted on his progress, please keep us in your prayers and positive thoughts.

My baby turned one this weekend and I would move heaven and earth to get her anything she needed. In tears reading about your battle and the negativity you have had to endure in the face of such devastaing news. You and your husband are inspirational and this is testament the fact that your wee son is such a fighter. You're exploring all avenues to provide help for your son and anyone who wouldn't do the same has never known love. God bless you in your battle stay strong wee man, everyone wishes you a speedy recovery x x

In tears again Leona. The majority of people know that you only have Oscar's best interests at heart, and that you and Stephen are fantastic parents. Thank you for sharing Oscar's story with us and please continue to do so. I think we all feel a part of Team Oscar! As I've said to you before, your family has taught me so much, especially how precious my children are and not to take their good health for granted. Keep fighting Wee Oscar, we're all right behind you! Love to you all. Erin.

Leona there will always be someone with something nasty to say but please please ignore them. Although your blog is not always easy to read I, along with many other people, want to know how Oscar and you are all doing. Your blog has inspired and given strength and courage to many of us, not to mention the good you have done for children with Neuroblastoma by spreading the word. We all look forward to the next time Oscar announces he is cancer free again. He is one amazing little boy and you have one amazing family. Stay strong. Go #TeamOscar you kick that cancers butt. Dee xx

Leona, unfortunately there will ALWAYS be ruthless people in this world and quite honestly no-one normal takes on board what they have to say- they're disgusting.We had similiar remarks over a few articles we did for Clic sargent when Honour was asked to help out with campaigns and we were just trying to do good..you can't do right for doing wrong-however,NONE of that is important,Leona,what's important is that you stayed strong for Oscar,did absolutely everything that was in your power to help him and you succeeded! You're an amazing wee family with absolutely adorable wee children,we are all behind you 100%,many havent met Oscar in person but by following him on his journey have grown to love him too.We are with you in thoughts and prayers day and night...we ALL need Oscar to get better.Lots of love and big hugs xoxoxo Rachel xoxoxoxo

You are wonderful parents, and anyone who makes such comments have clearly no compassion nor have they ever held their sick child, a parent will fight tooth and nail for their baby, go to the end of the earth and back on their knees, be proud that your darling son has been blessed with you two as parents, your fight and courage is what makes Oscar the star that he is. Love and prayers on this awful journey and please god your happily ever after comes soon xo

Team Oscar let your pure 100% love for your beautiful wee Oscar drown out any hurtful remarks and deflect the arrows Oscar is what is most important to us all and we all share your hope and love for the bravest wee man, don't even comment on the negatives because they are not worth a second thought, lets all get behind our hero. Oscars fight is our fight. St Pio please lead Oscar back to full health. God bless you all.

Leona there is always going to be someone with negative comments ignore these small minded people. From the first time i seen and read Oscar's story he captured my heart like thousands of other people throughout the world. Oscar is personally an inspiration and a total legend, he just draws you to him. I was so shocked and saddened by the news that his cancer had returned but with Stephen, yourself and your families in his corner I know he will beat this. I am sending all positive thoughts, love and prayers your way.xx god bless #teamoscar #keepfighting

Please ignore these people you are wonderful parents and i would have done the same . As for you lovely little lad he is so loved by so many and people myself included have a special place in their hearts for your boy. So be proud and keep doing what you are doing that little boy is so lucky to have the family he has . May God Bless you all and i know that Team Oscar will win once more xxx ST Anthony who loved the child jesus please help this little one xx

LEONA words fail me how people can be so cruel and narrow minded we are all behind you and beautiful Oscar it breaks my heart thinking of your hurt and fear for your we BABA he was blessed with two wonderful parents may god give you all need to fight on gloves up wee man round two has started we are all behind you knock it out wee man here we go here we go here we go you can do it xxx

I don't understand how anyone can be negative about the journey your family has been through! The strength and determination of your family to fight this awful disease is amazing. You have made us all realise how precious life is and how we need to fundraise to beat cancer! It is good to hear Oscar is in less pain today. My thoughts and prayers are with Oscar and your family x

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God bless u and ur family!! Thinking about u all at this time. goodluck with the treatment x x don't let others annoy u ur an inspiration to other parents an if the shoes were on my feet I'd do the same.I send love to u all on this difficult journey! X xm

There will always be the cynics and the haters out there Leona.. Just ignore them, you and stephen have much more important things to focus on. Everyone that has followed Oscar's story has helped in whatever way from the goodness of their hearts and we all know what amazing parents you are and that you're only trying to give Oscar the best possible chance to get well. Glad to hear treatment has started and Oscar is a bit more comfortable tonight. We're right behind yous every step of the way hoping and praying that Oscar can win this battle. Stay strong! Hugs for Oscar

God bless wee oscar on his dreadful fight against this horrible disease once again..hes showed us hes a fighter so lets hope & pray he can do it again.cmon wee man we r all behind ya once again..#teamoscar#

I read your blog in sadness that you felt you had to explain this detail. You shouldn't EVER! As someone else already said, there will always be negative people! How sad for them!!I read with the most interest and happiness that little Oscar feels less pain today and got to celebrate his sister's birthday. You, your family and Oscar are an inspiration to people, sharing your experiences, positivity within and sadly the reality of a horrible and rare disease affecting children and particularily your precious Oscar. It is a horrendous thing to sit by the bedside of your sick child. Keep strong and keep fighting! Hugs and kisses to an amazing little fighter, Oscar! XXX

Dr. Wayne W. Dyer - Author"What other people think of me is none of my business."

Ignore them, they don't matter. You have a bigger fight on your hands, and the love, prayers and thoughts of so many people are with you, people who also recognise the good you have done, and the foundations you have laid for children in Oscar's situation in the future. Thinking of you and your family. Karen xxx

Negative comments will always come but these r from ppl with no heart or care in the world... we dnt need to know somebody personally with this awful disease to care, its natural to care and want to support others... oscar is so brave and should not be suffering like this... thoughts and prayers with this wee soldier.. god bless u and ur family... keep fighting little man...

thoughts and prayers to wee oscar and your fanily hes the bravest little bhoy i have ever known,dont pay any attention to these people who post negative comments they are not worth even thinking about,you and your husband are brillant parents and will fight tooth and nail to get your little man well which any parent would do so forget about these silly little people and lets all concentrate on getting irelands bravest little bhoy back to good health, god bless you allxxxx

Best of Luck Wee Man...... Focus only on the Positives... Our Thoughts and prayers are with Oscar and his Family.... xxxxxxxxx You dont need to explain yourselves or your situation to anyone... Lots of Love...xxxx

So sorry to hear Oscar's cancer has returned. I really hope he can fight it and win again. Ignore all the negative comments, you need to keep your strength for Oscar, not for these pathetic excuses for human beings. You really have such an uphill struggle in front of you, I am praying for a positive outcome. Enjoy every precious moment with your little boy. God bless you all.

Stay Strong for Oscar may god look after him and you and your family people like that just don't think about the hurt that their words can mean to families whenthey are sick with worry about their son over opinionated cruel and unkind may god forgive them x

Wishing you all only the best...I just cannot understand how people an be so unpleasant! It never ceases to amaze me how people think it their place to judge!I am so glad Oscar is feeling less pain and I am thinking of him and all of his family.Oscar is a little fighter!Much love to you all,Sian

Unfortunately there will always be individuals who post nasty comments, but do your best to ignore them. The vast majority of people who read your blog and facebook page are well-wishers who are praying once more that Oscar gets over this latest hurdle. As a parent, my heart goes out to you and I wanted to scream for you when I read Friday's update. No child should ever have to suffer like this, and no family should have to go through this heartache. You absolutely did the right thing by fundraising and raising awareness - I think most parents would do the same thing in your position. Good luck to Oscar, keep fighting wee man, we're all willing you to beat this once more xx

there will always be sad attention seekers out there but ti take comfort in the thought that I know where they will spend their afterlife for being so heartless. for me I am grateful that you take time to keep us all posted on Oscars wellbeing as I am privileged to say that your wee man claimed a good size chunk of my heart a long time ago! to me and the majority of this country we have nothing but admiration and respect for your familys bravery faith and pure determination! as for fundraising the few people I know here that have already started to arrange fundraising for the appeal again are doing it for this simple reason--we love Oscar we love your family so we want to feel needed and the only way we can do this is offer prayers love and our help so focus on your fight the extended family will handle the rest! give Oscar my love and a cuddle take care of yourselves and keep fighting. p.s saw the pic of isobella and Oscar for her wee birthday party hope yous had as great a day as your hearts allowed--god bless Leona and take care-----love charlotte mc grath!

Words fail me!!!what can I say. Northern Ireland's TRUE hero. He is a fighter as he has proved and will fight again to clear his wee body of this horrible disease. As parents such dignity and courageous people who are a TRUE inspiration to all people out there. Oscar and your family are being talked about and prayed for in many many places that you have probably never heard tell off. Assuring you that positive thoughts and prayers for Oscar and the family will be heard. Thanks for keeping everyone informed of Oscars slow but sure progress. X x

Hi I am Danielle McGriskins Mum, Amanda and firstly thank you for supporting Danielle, she really appreciates your support even as you are going through your own journey. Only those people who have to face these big challenges in life will understand the passion and fight you have to not only get your own child better but to support the charities out there who do an amazing job. Danielle decided at 14 to raise awareness of brain tumours and fund important research through the Brain Tumour Charity. Asked why she says I am lucky my tumour is not aggressive and it is too easy to hope that someone else raises the money that is so desperately needed. Danielle is so passionate and strong and as a teenager she has achieved so much due to her illness. As a mum I just want her to be like any other teenager enjoying herself but she cant and therefore her focus is her fundraising which gives her so much strength and joy. She is not worried about the negative comments and I really hope you do not worry about them either. You are doing amazing well with all the support and we will continue to support you. x x Amanda PS still need to take Danielle to the Europa for her afternoon tea as you suggested x x

My prayers continue to be with you all. Do not worry about negative comments they most likely xome through lack of empathy and understanding of your journey or perhaps they do not have children so they woukd have no understanding of the lengths u would ho to help and protect your child. Stay strong and keep fighting little man. May god be with you and behind the excellence of the medivsl team helping you. Xxx

Always in our thoughts wee man. We seen first hand how strong you are and how hard you fight. Keep the spirt high and you show cancer what you're made me just like you did the last time round. You have amazed not only family and friends but the whole world, so best foot forward and give it your all. Love thoughts and prayers to you all xxxx . Beth and family xx

hiya, im totally horrfied that people would be so nasty to youz, i think you and your family are amazing and that your beautiful wee oscar is the most courageous wee super hero i know (not personally lol but would be honoured if i did) from what i read and watched on tv, im sending hugs to youz all and a wee kiss to oscar, keep up the fight, god bless to youz all xxx

You don't need to justify yourself to little trolls that have nothing better to do I hope wee Oscar beats this terrible disease again no child or family should have to go through what yous have gone through.

No justification needed, it's horrifying that people look for the bad in situations like this.The world is behind Oscar and his fight against this cruel disease and by keeping positive and having a loving and adoring family willing to do anything and everything for him, let's pray that this little fighter can bounce back like he has done and show everyone that cancer doesn't always win. I can only imagine what you are all going through but thoughts, prayers and best wishes are being sent your way from around the world. God Bless you little man keep giving us a great reason to love and support you. Love Always, Kimberley Howe xxxxxx

Honestly you don't have to justify yourself to anyone. look after your little man. He is all our prayers and I am going to say a prayer for his mammy and daddy. Oscar keep fighting your a tough little bugger you can do it again.

The important thing through all of this is Oscar, forget about the nastiness of others they are not worth giving the time of day - focus your efforts on your gorgeous wee son. Thoughts and prayers are with you all at this most difficult time, I hope his recovery is swift and his discomfort minimal x

You are both incredible parents who are using all their strength to try and make your little boy better. You do not need to justify yourselves to anyone, people are vile posting things like that. Like you said all you want is normality and oscar to get better..everyone is behind you guys a d your brave little boy as he takes on this illness once more. He can do it...he is in my thoughts and prayers everyday. God bless you all x

lite and candle for Oscar yesterday at Chapel my thoughts and prayers are with you all maybe should have lite one for the scum making these comments obviously these people are not normal because any normal person would do exactly what you and Stephen have done for Oscar.Keeping the prayers going for you all love to Oscar and Izzy. Angela and Patrick Golden

You don’t need to explain, most of us understand exactly where you are coming from. I don’t know any parent who wouldn’t fight for a chance for their child if facing the same situation. Take strength from people who support you even though you might never know them.

This place(NI) has more than its fare share of scum from all sides which just means you have to turn up the 'ignore' button a notch higher. I hope your lad does well, he looks like a right cheeky bugger :)

He sounds like a brave chap and I really wish him and you as his parents the very very best.

Don't feel the need to apologise or worry about any negative comments being posted. There are thousands of positive comments and everyone with a heart is praying that your little warrior will come through this again. I have been overwhelmed reading the messages of support and prayers from all communities in across the Globe. May god give you all strength to get through this terrible time.......Go for it Oscar you little champion

Dear Stephen and leona Praying for little Oscar.Remember that Jesus Christ is still the greatest healer in all the world.He can heal little OscarJust call out to Him ;He will hear.It says in the Bible " Call upon ME in the day of trouble and I WILL deliver you, " saith the Lord.Jesus is just the same today as when He walked through thr Promised Landb two thousand years ago.Can you bring little Oscar to a church for the"laying on of hands " in the Name of Jesus .Thid is one of the directives given by Jesus for ministering to the sick in Marks Gospel Chapter16 verses 17+18. Do not be afraid ----- God loves you and has made this wonderful provision through His Church. praying that you will be encouraged and also praying for little Oscars healing. Margaret

You certainly don't need to justify any of what you guys have done..you've done the best for your son and in the process, you have helped raise awareness of what other families go through, too. I know that there are people out there who are hurting and who draw strength from your example and from Oscar's. Please don't be afraid EVER to ask for help.Behind you all the way,Jennie and Maddie-Rose

I'm guessing these people posting negative comments have never endured the heartache of watching your child suffer. As parents you are an inspiration! I'm sure you would have liked nothing more than to deal with Oscars illness privately as a family and shut yourself away and scream and cry, but that wouldn't have helped Oscar. The time and effort you have put in to fundraising while nursing a sick child is commendable and outstanding! As a Mother i would do exactly the same in your shoes. God bless wee Oscar, my kids pray for him every night and will him to get better. #teamoscar #superparents

that's what you shouldn't waste your time on pathetic attention seekin scum who's lives are that pathetic they seek attention with comments that they know will provoke a reaction they need to be careful it doesn't backfire on them cuz personally id like 5 minutes with them!!!! you and your husband are a wonder to behold your bravery and devotion are clear to see by anyone and as for your blogs here I search every day for news on your darling boy you see to me and the whole country and indeed beyond your wee Oscar is OUR wee Oscar,our hero and our inspiration!!! im glad your little girl enjoyed her first day of school give her a sense of normality in all the chaos......as always my prayers and hopes are with you every second of every day god blees and give Oscar my angel a big hug and kiss !!!yours.... charlotte

I never put comments on these blogs, however this time I will make an exception. Those making the negative comments, have had probably had the opposite affect than they would have wanted. Had they not made these comments, then my FB friend would not have responded, I would have not known about your appeal, and then I would not have donated!! Go lucky with you appeal and I hope my little donation helps